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Published On: Jul 16, 2004 02:53 PM
Published On: Jul 16, 2004 02:53 PM
Fri - July 16, 2004
Delayed entry - Hearing follow up with Wazen
Back about a month ago (Friday the 18th of June)
I had a follow up appointment with Dr. Jack Wazen in NY. The primary reason for
the appointment was an auditory exam to see how my hearing had ended up three
months after the surgery and to evaluate possible implant options (e.g. BAHA).
I knew before the appointment that I could hear surprisingly well, but I was
excited to find out after the test that my right ear tested just about the same
as before my surgery. More significantly, my word recognition had improved from
76% to 92%. I could not have hoped for a better outcome given the nature of my
tumor. If you are so inclined, I have posted the test results
here.
So, no need for a BAHA, and no need for a hearing aid - yet. Yeah, I'm pretty darn lucky, and I know it.
So, no need for a BAHA, and no need for a hearing aid - yet. Yeah, I'm pretty darn lucky, and I know it.
Posted at 02:43 PM
Sat - May 22, 2004
Dr. Sisti follow Up
Sara and I both met Dr. Sisti on Friday morning.
He started out with an eye test - moving his finger, having me track it by only moving my eyes. It's interesting in that when moving to the right there is a noticeable "hitch" in my right eye where it will delay catching up to the other eye. This was a new one on me and he said it is quite common with my sort of surgery. The wild part about it was that on subsequent tries the brain is flexible enough to compensate for the change and then eliminate it. Neat stuff.
Anyhow, the echo and thumps I have will indeed go away over time, and the minor drainage I had from my nose was nothing to worry about - simply sinus he says. The "click" I had is now only a mild thump which is louder when I exert myself. He basically gave me the go ahead to do anything I am willing to try from a physical exertion perspective. In fact, the more I challenge myself at this point the better as long as I know my limits. The scar tissue should continue to fade both internally and externally - the staple holes. Driving is actually good for me at this point as the turning from side to side stretches the scar tissue and helps to remove it. He said the marginal improvements from now on will not be very noticeable, and that after a year that's what I should expect to have for the rest of my life.
I have a follow up MRI in 6 months where we'll see the extent of the internal scar tissue and the auditory canal where the tumor was. He also felt I should take it slow with Dr. Wazen on any possible implant for hearing as my hearing may continue to improve in the next few of months. I will have the hearing test in a month, but will most probably hold off on exploring the BAHA.
The most important comment he had was that my personal approach to this now should be from the perspective of not ever having a tumor or the surgery. Don't dwell on it, and move on with life. Good advice I thought.
He started out with an eye test - moving his finger, having me track it by only moving my eyes. It's interesting in that when moving to the right there is a noticeable "hitch" in my right eye where it will delay catching up to the other eye. This was a new one on me and he said it is quite common with my sort of surgery. The wild part about it was that on subsequent tries the brain is flexible enough to compensate for the change and then eliminate it. Neat stuff.
Anyhow, the echo and thumps I have will indeed go away over time, and the minor drainage I had from my nose was nothing to worry about - simply sinus he says. The "click" I had is now only a mild thump which is louder when I exert myself. He basically gave me the go ahead to do anything I am willing to try from a physical exertion perspective. In fact, the more I challenge myself at this point the better as long as I know my limits. The scar tissue should continue to fade both internally and externally - the staple holes. Driving is actually good for me at this point as the turning from side to side stretches the scar tissue and helps to remove it. He said the marginal improvements from now on will not be very noticeable, and that after a year that's what I should expect to have for the rest of my life.
I have a follow up MRI in 6 months where we'll see the extent of the internal scar tissue and the auditory canal where the tumor was. He also felt I should take it slow with Dr. Wazen on any possible implant for hearing as my hearing may continue to improve in the next few of months. I will have the hearing test in a month, but will most probably hold off on exploring the BAHA.
The most important comment he had was that my personal approach to this now should be from the perspective of not ever having a tumor or the surgery. Don't dwell on it, and move on with life. Good advice I thought.
Posted at 02:48 PM
Mon - May 17, 2004
Dr. Wazen follow up
Had a morning appointment with Dr. Wazen this
morning to follow up on my hearing issues. He said I looked good and that I
seem to be handling the balance issues well. He had me walk in a straight line
heel to toe, which nearly made me fall down the first time, but I rallied for a
the second time.
In terms of the thumping and echo I mentioned in my last post he indicated that the thumping (pulse) should fade in the next month and that the echo/vibration is probably cranial hearing loss related which should also fade. The fullness and other noises I have are most likely fluid in my mastoid area (will have to look that one up). He was impressed that my hearing was as good as it is. Overall a good trip to the City, although I'm quite tired now. I have a follow up with him in a month for a hearing test to start the process of possible augmentation there.
This Friday I'm supposed to see Dr. Sisti, but he's canceled twice, so we'll see.
Jon
In terms of the thumping and echo I mentioned in my last post he indicated that the thumping (pulse) should fade in the next month and that the echo/vibration is probably cranial hearing loss related which should also fade. The fullness and other noises I have are most likely fluid in my mastoid area (will have to look that one up). He was impressed that my hearing was as good as it is. Overall a good trip to the City, although I'm quite tired now. I have a follow up with him in a month for a hearing test to start the process of possible augmentation there.
This Friday I'm supposed to see Dr. Sisti, but he's canceled twice, so we'll see.
Jon
Posted at 03:47 PM
Wed - May 5, 2004
Four Weeks Out
Four weeks ago right now I was in surgery. Sorry
for the delay in posting here, but I've been occupied with getting better and
getting back to "normal" with kids and activities. This past weekend was Anna's first
communion for example.
In general I am doing quite good - better than I could have ever expected at this point. I feel good most of the time, and have minimal side effects from the surgery. Those are as follows: occasionally I have headaches, but they are never very bad and I have an internal debate that they may be caffeine related rather than due to my recovery. Regardless, they are easily resolved with tylenol. My balance is marginally better, but I still am a little uncomfortable after quick movements. Turning side to side to look for traffic while driving results in me having a "whoa" moment still, so I take it quite easy behind the wheel. I walk a lot which seems to help in many respects. My energy level is generally good, but the end of the day can be hard. A nap a day helps a great deal. The most annoying side effects are the noises related to the healing on my right side. The tinitius is still there and the clicking with each pulse remains. The clicking though has stated to abate a little. Often in the mornings as I wake up the click/thump with pulse is very soft or non-existent. As I start moving around it returns. I hope this is a sign of it fading. There are also odd crackling noises when I move my head in various directions. I have to figure there's still a great deal of healing going on in there and some slushing around of fluids until it all settles down. Beyond, that I have an echo in my right ear when ever I speak to anyone - sort of like a low frequency hum. I'm hoping this part resolves itself in time as well. On the positive side, I can hear in my right ear. I'm estimating that it's about 50% for now using my unscientific iPod test. Still, it's better than nothing. So much for the HEI recommendation or Translab and no chance of hearing in that ear...
Still no word from Cigna on the cost of my stay and surgery for the Bonehead Challenge. As soon as I hear I will let you know.
I would also like to thank all of you who have helped, called, or prayed for me. I'm working on personal notes to everyone, but it takes time.
More soon...
In general I am doing quite good - better than I could have ever expected at this point. I feel good most of the time, and have minimal side effects from the surgery. Those are as follows: occasionally I have headaches, but they are never very bad and I have an internal debate that they may be caffeine related rather than due to my recovery. Regardless, they are easily resolved with tylenol. My balance is marginally better, but I still am a little uncomfortable after quick movements. Turning side to side to look for traffic while driving results in me having a "whoa" moment still, so I take it quite easy behind the wheel. I walk a lot which seems to help in many respects. My energy level is generally good, but the end of the day can be hard. A nap a day helps a great deal. The most annoying side effects are the noises related to the healing on my right side. The tinitius is still there and the clicking with each pulse remains. The clicking though has stated to abate a little. Often in the mornings as I wake up the click/thump with pulse is very soft or non-existent. As I start moving around it returns. I hope this is a sign of it fading. There are also odd crackling noises when I move my head in various directions. I have to figure there's still a great deal of healing going on in there and some slushing around of fluids until it all settles down. Beyond, that I have an echo in my right ear when ever I speak to anyone - sort of like a low frequency hum. I'm hoping this part resolves itself in time as well. On the positive side, I can hear in my right ear. I'm estimating that it's about 50% for now using my unscientific iPod test. Still, it's better than nothing. So much for the HEI recommendation or Translab and no chance of hearing in that ear...
Still no word from Cigna on the cost of my stay and surgery for the Bonehead Challenge. As soon as I hear I will let you know.
I would also like to thank all of you who have helped, called, or prayed for me. I'm working on personal notes to everyone, but it takes time.
More soon...
Posted at 11:26 AM
Sun - April 18, 2004
Mary Smiled
For those here who have had contact with Dr.
Sisti, you understand the title of this entry. I had my first follow up
appointment this past Monday at the Neurological Institute on 168th street (got
my staples out as well). I tried unsuccessfully to get my parking validated,
but Mary did smile as I tried. I like the quote, "who knows the mystery of
Mary". I would liken attaining the "smile" to turning the corner on your
recovery, but I'm still thinking on
it....
It's taken me a while to get this next entry in (although this entry is dated 4/18, today is actually 4/22). Thanks for being patient, but I've been using the better part of my energy to relax and heal up. Doctor's orders you know. It seems odd that it's only been two weeks and a day since my surgery. Let's see if I can get you up to speed without too much chaff.
First off, I do not have the most frequently mentioned side effect - headaches. I'm quite lucky on that count. Maybe it had something to do with the fact that I'm not a fat head - no really. Dr. Sisti indicated that I had very little fat or muscle inside my noggin, and that that would help me as far as the healing process was concerned. I did have one headache three mornings ago, but I think I got a hold of a less than fresh pint of Guiness over dinner with my Dad. Two Tylenols later and that was better. I am off all medication now. I think my last steroid was last Friday. There had been mention of a possible emotional let down after stopping that stuff, but it was hard to tell if I did. The change from rain all last week here to sunny and warm Spring days this week may be a factor in keeping me positive here. My balance is slowly getting better. I can walk as far as I want to without any problem. I would say that I am still a little wobbly. Quick movements or looks to the side quickly result in my weaving just a bit. I do then compensate very quickly. I probably look a bit like a drunk weaving along the sidewalks. Today I made it up to the Montclair Public Library and back again. Once home, I flopped on the couch and the next thing I knew it was 1:30. Long deep naps do come quite easy these days.
Per my doctor I am not supposed to bend over or pick up anything heavier than a remote control, but I've stretched this a bit. The very slight drain I noticed early on is no longer in existence, so I'm relieved at that. The fullness, echo, and pulse thump in my right ear is still there and the most annoying side effect overall. The echo is there when I speak or in large settings - restaurants for example. I went to the Blue Stone Cafe for breakfast with my brother this past Friday (the 16th) and was really thrown off by the cacofany. Also, bad move of the month would have to go to me for thinking it would be OK to go to the NY Car Show. It was too crowded and noisy. The best way I can characterize the clicking sound with the pulse would be to liken it to a stapler being punched on each pulse. It's quite annoying, but does not seem to keep me up at night.
I have to take the fact that I have some hearing in the right ear as a good sign. I'm also confident that as it heals and drains that more of my hearing will return. I can currently switch my ear plug (at night) from my good ear at normal volume to the right ear and still hear and understand the voices. They do come in at half volume, but I take that as a good sign. I was also able to carry on a conversation with Nancy Bonnet (who I also passed by on my walk) yesterday using my right ear, but it was difficult. One more example, and I'll leave the hearing. On my walk today I took the iPod with me (Aimee Mann, "Whatever" and Kirsty MacColl "Tropical Brainstorm" if you're checking), and the right ear sounded like an old 78 rpm record at half volume. One more comment on music - since one reason I went with an approach that could possibly save hearing was because I enjoy music so much. I was enjoying the paper and some coffee this morning with Radio Paradise on when one of the first songs that I noticed my diminished right side hearing with came on - "Get Down Moses" by Joe Strummer and the Mescaleros. An excellent song and a great album.
A little book keeping:
I have posted the operation notes on my .Mac My Noggin Page . Interesting detail I thought, and a possible reason my neck hurt so much afterwards.
The donation part of the Bonehead Challenge has been sent off to Doctors Without Borders . Our donation was $825, and the winner will get $475 once I get the bill from Cigna.
It's taken me a while to get this next entry in (although this entry is dated 4/18, today is actually 4/22). Thanks for being patient, but I've been using the better part of my energy to relax and heal up. Doctor's orders you know. It seems odd that it's only been two weeks and a day since my surgery. Let's see if I can get you up to speed without too much chaff.
First off, I do not have the most frequently mentioned side effect - headaches. I'm quite lucky on that count. Maybe it had something to do with the fact that I'm not a fat head - no really. Dr. Sisti indicated that I had very little fat or muscle inside my noggin, and that that would help me as far as the healing process was concerned. I did have one headache three mornings ago, but I think I got a hold of a less than fresh pint of Guiness over dinner with my Dad. Two Tylenols later and that was better. I am off all medication now. I think my last steroid was last Friday. There had been mention of a possible emotional let down after stopping that stuff, but it was hard to tell if I did. The change from rain all last week here to sunny and warm Spring days this week may be a factor in keeping me positive here. My balance is slowly getting better. I can walk as far as I want to without any problem. I would say that I am still a little wobbly. Quick movements or looks to the side quickly result in my weaving just a bit. I do then compensate very quickly. I probably look a bit like a drunk weaving along the sidewalks. Today I made it up to the Montclair Public Library and back again. Once home, I flopped on the couch and the next thing I knew it was 1:30. Long deep naps do come quite easy these days.
Per my doctor I am not supposed to bend over or pick up anything heavier than a remote control, but I've stretched this a bit. The very slight drain I noticed early on is no longer in existence, so I'm relieved at that. The fullness, echo, and pulse thump in my right ear is still there and the most annoying side effect overall. The echo is there when I speak or in large settings - restaurants for example. I went to the Blue Stone Cafe for breakfast with my brother this past Friday (the 16th) and was really thrown off by the cacofany. Also, bad move of the month would have to go to me for thinking it would be OK to go to the NY Car Show. It was too crowded and noisy. The best way I can characterize the clicking sound with the pulse would be to liken it to a stapler being punched on each pulse. It's quite annoying, but does not seem to keep me up at night.
I have to take the fact that I have some hearing in the right ear as a good sign. I'm also confident that as it heals and drains that more of my hearing will return. I can currently switch my ear plug (at night) from my good ear at normal volume to the right ear and still hear and understand the voices. They do come in at half volume, but I take that as a good sign. I was also able to carry on a conversation with Nancy Bonnet (who I also passed by on my walk) yesterday using my right ear, but it was difficult. One more example, and I'll leave the hearing. On my walk today I took the iPod with me (Aimee Mann, "Whatever" and Kirsty MacColl "Tropical Brainstorm" if you're checking), and the right ear sounded like an old 78 rpm record at half volume. One more comment on music - since one reason I went with an approach that could possibly save hearing was because I enjoy music so much. I was enjoying the paper and some coffee this morning with Radio Paradise on when one of the first songs that I noticed my diminished right side hearing with came on - "Get Down Moses" by Joe Strummer and the Mescaleros. An excellent song and a great album.
A little book keeping:
I have posted the operation notes on my .Mac My Noggin Page . Interesting detail I thought, and a possible reason my neck hurt so much afterwards.
The donation part of the Bonehead Challenge has been sent off to Doctors Without Borders . Our donation was $825, and the winner will get $475 once I get the bill from Cigna.
Posted at 07:29 PM
Fri - April 16, 2004
Recovery (part 3)
Some additions to part 2
-
Day 3 (Saturday) - I was finally able to eat real food by lunch time on this the third day. Also, my neck strain finally subsided this morning. Lunch was a somewhat bland chicken dish, but I ate most of it, including the soup. Actually, the chicken may not have been that bland. My taste has been affected a bit as a result of the surgery. It's a common short term side affect I am told, but everything seems dull and boring. Salty and sweet tastes are minimized a little. The other bonus of having Sara around all day was that I was able to have help taking a shower. It feels really nice to loose a layer of filth, and shave 4 days growth of beard off. The one final surprise of the hospital stay was an unexpected leg ultrasound at 10:30 this night. I was getting ready to sleep after Sara had left and they showed up at my door with a wheel chair indicating I had an appointment in Ultrasound. My immediate reply was WTF?. I then continued to challenge them, indicating that no one had mentioned anything about it to me. Finally, they found paperwork that stated that since I had a bit of a fever on the first day they needed to check my legs for possible blood clots. Soooooooo, I was wheeled down to the 3rd floor and lubed up with goop on my legs which allowed the tech to run an ultrasound device from my hip on each side to my knee. I got to watch the results on a color screen next to me and the technician described each part of the process. Thankfully all was fine. I have very nice veins. :)
Another side affect of the anesthesia is that your sleep patterns get all out of whack, again the battle with time. It's not uncommon to be up in the middle of the night wide awake. For this I really enjoyed my portable radio which I brought from home. With the ear plug for the good ear and all the choices of channels in NY, it was essential. Most times I was back on the BBC World Service.
Day 4 - Sprung
I had a 7:00 Am visit from the Neurosurgeon Intern who asked the brain tests and then indicated that he was going to work up the release papers. Once the day nurse (Jane) arrived she would complete the sign out and I would be free to go. Sara had planned to meet me at 9:00, so it was all set. I felt fine. A little wobbly, which I still am, but good enough to walk to the car in front of the Milstein Building instead of using a wheel chair. The ride home was fine - no nausea. It was an odd sensation for my balance to deal with, and I do see why it may be a couple of weeks before I should drive. We got home (after a trip to the drug store) at about 10:30 to a full group of girls waiting to see me. Then after a shower and shave I got dressed in some real clothes and had a nice Easter Ham dinner. Just before we ate Father Bill stopped by with a mini Easter service and the Eucharist for me and Sara. Made it nice to be home to see him. Then the dinner was excellent. It really felt good to be home. After that - nap time.
Next up - a summary of how the first week home has been.
Day 3 (Saturday) - I was finally able to eat real food by lunch time on this the third day. Also, my neck strain finally subsided this morning. Lunch was a somewhat bland chicken dish, but I ate most of it, including the soup. Actually, the chicken may not have been that bland. My taste has been affected a bit as a result of the surgery. It's a common short term side affect I am told, but everything seems dull and boring. Salty and sweet tastes are minimized a little. The other bonus of having Sara around all day was that I was able to have help taking a shower. It feels really nice to loose a layer of filth, and shave 4 days growth of beard off. The one final surprise of the hospital stay was an unexpected leg ultrasound at 10:30 this night. I was getting ready to sleep after Sara had left and they showed up at my door with a wheel chair indicating I had an appointment in Ultrasound. My immediate reply was WTF?. I then continued to challenge them, indicating that no one had mentioned anything about it to me. Finally, they found paperwork that stated that since I had a bit of a fever on the first day they needed to check my legs for possible blood clots. Soooooooo, I was wheeled down to the 3rd floor and lubed up with goop on my legs which allowed the tech to run an ultrasound device from my hip on each side to my knee. I got to watch the results on a color screen next to me and the technician described each part of the process. Thankfully all was fine. I have very nice veins. :)
Another side affect of the anesthesia is that your sleep patterns get all out of whack, again the battle with time. It's not uncommon to be up in the middle of the night wide awake. For this I really enjoyed my portable radio which I brought from home. With the ear plug for the good ear and all the choices of channels in NY, it was essential. Most times I was back on the BBC World Service.
Day 4 - Sprung
I had a 7:00 Am visit from the Neurosurgeon Intern who asked the brain tests and then indicated that he was going to work up the release papers. Once the day nurse (Jane) arrived she would complete the sign out and I would be free to go. Sara had planned to meet me at 9:00, so it was all set. I felt fine. A little wobbly, which I still am, but good enough to walk to the car in front of the Milstein Building instead of using a wheel chair. The ride home was fine - no nausea. It was an odd sensation for my balance to deal with, and I do see why it may be a couple of weeks before I should drive. We got home (after a trip to the drug store) at about 10:30 to a full group of girls waiting to see me. Then after a shower and shave I got dressed in some real clothes and had a nice Easter Ham dinner. Just before we ate Father Bill stopped by with a mini Easter service and the Eucharist for me and Sara. Made it nice to be home to see him. Then the dinner was excellent. It really felt good to be home. After that - nap time.
Next up - a summary of how the first week home has been.
Posted at 08:42 AM
Thu - April 15, 2004
Recovery (part 2)
Today it's a week since they moved me to the 8
Hudson North wing of the Milstein Building for recovery. If I don't jot down my
memories now, I may lose them, so here
goes.
Day 1 - Thursday
With a sunny morning, the room seems bright and things are looking up. There is still dry throat and mouth, but I can take a few ice chips without immediately getting nauseous, so there's progress. The recovery nurse has passed on a breathing exercise device which I am told to use every hour to help loosen up and exercise my lungs - basically a plastic device you inhale and exhale in to a fixed level while keeping a activity floater between two bars. It's not too bad of an exercise, although I can tell I'm weak to start. Then within 30 minutes of getting there, a full breakfast is delivered. I still can't bear the thought of food, so it sits. Overall I was not feeling great, but it was as if the blur of the night had cleared. Then it really helped when Dr. Sisti stopped by.
He started off with the "is your brain functioning tests" which had become common from the night before. Just so as you know, you would get requests to: smile, stick out your tongue, follow a finger with your eyes, apply negative and positive pressure with extremities, answer questions as to the date and location, and now juggle these, do a tap dance and sing the Catalina Magdalina Luptenschteiner Volunbeiner song!. Well, not yet...
Anyhow, Sisti reviewed ( a second time since he had done it at my bed side in recovery) how the operation had went. That they had removed all of the tumor, and that I was till in the game on hearing in my right ear. He also described how since my tumor had not yet compromised the balance nerve before it was removed, my adjustment period would be more difficult than someone who had already had time to compensate - someone with a larger tumor. He was very upbeat, very confident, and very matter of fact. I could not have appreciated it more. At the tail end of his review my Mom and Sara arrived for a short visit, so they got the chance to speak to the doctor. He gave them a brief review of what he had just told me, and then commented on the changes since my Mother's surgery some 20 years ago for the same thing. I was very thankful she got to meet him. Their visit was for a large part of the morning, but it seemed short to me. I did a lot of fading in and out of naps. That was fine though it was nice for them to be there just reading and relaxing. I did try and sit up once with the help of the electric bed, and wow, what a spin. Actually, more of a shake from side to side and general feeling of unsteadiness. I laid back down and had another nap. Pain wise, I was not too bad off. My muscle pull in the neck was still very sore, but I did not have headaches and the 12 staples in my head did not hurt at all. I maintained tylenol - mostly for the neck. I would not say the day was easy though - sort of like a really bad hang over. I did have one last bought of nausea. Just as Sara and and my Mom were leaving I tried to sit up and say goodbye and had a an unexpected hurl which sprayed their visitor passes. I think they were let out OK without them...
A nice bonus of being in the regular room rather than recovery was the removal of all the other attachments - leg massagers, artery feed, and automated blood pressure.
An aside - Timing
Before surgery I provided you with an interesting story of Microsoft's timing and their legal issue management. You read it right?
Well, think about timing another way - changes in this surgery and how it was approached now and then. In the 1950s, 20% of those with an AN died during surgery. In subsequent decades, rates improved, but other issues lagged. See a little history. I was really lucky to have this identified now rather than earlier. Even as my brother relates the stories of his friend Trent who had AN surgery 10 years ago, I am so much better off. It took him a year to feel himself again. Here I am 9 days out and I can basically function. Oh, and while I'm bouncing around, there's another story about Microsoft to read . Fun stuff.
Another aside - Location location location
If you must recover from brain surgery, consider a decent locale for it. On the 8th floor Hudson North ward you overlook the Henry Hudson Parkway and the Hudson River. There is also a spectacular view of the George Washington Bridge with a stark table and two chairs as your only furniture. When you're shuffling around the hallway it's nice to look out and see. Also, if you stroll north through the epilepsy ward you have a nice view of Midtown.
At the end of the day, I was able to make it to the bathroom unaided. Wobbly, but OK, and no nausea. I needed the pee bottle late that night, but then it was done. The anesthesia is a significant poison to the system. Have I said that already? At this point though I feel very lucky that I do not have the headaches that were predicted or the nausea any more. I still do not have an appetite, but I fault the anesthesia for that. By the middle of the night I have been able to eat a couple of snack well cookies and a bit of muffin.
Day 2 - Friday
Other than gradual improvement on all fronts - more walking and a little more appetite, the highlight of the day was seeing my girls. They came in about 2:00 for about an hour. The brought hand made gifts and gave me big hugs. It was toughest on Claire who is our most sensitive. She was really upset by the sight of my staples (which are quite dramatic):
My ear seems swollen also - it's not THAT big. :)
Anyhow, Claire was doing her best to be very brave and happy to see me, but she was also upset at the sight of it. With a few extra hugs she made it through, but it was hard. My Mom and Barbara (Sara's Mom) took the kids downstairs to get a little ice cream, so that helped divert them a bit. I also felt bad that traffic really sucked that day. I can't believe Sara hung on for a trip to mid-town so the Grandmas could look visit a ribbon shop.
Let's see, what else? That day I also had a visit from the occupational therapist who (with two students) walked with me around the Hudson North race track checking out my progress. They were very impressed that I could turn my head to the right and back and maintain balance. Usually, a turn to the operated side results in uneasiness early on. This was my first sign I was doing better than I thought. I could also stop and start on demand with little problem. This was the only time I saw them. As far as doctor visits, of course they do continue throughout. On the first couple of days I would see neurosurgeon and ENT interns both in the morning and evening. Mostly, just the afore mentioned brain tests and questions of any issues. I did have a bit of clear drainage down my throat and nose (very little) which concerned me as it could have been a spinal fluid leak, but I reported exactly what I had and it was discounted as normal healing and drain. The other visits were the nurses. There was of course a normal schedule of medications - steroids, pain (tylenol only), and digestive medications, and checks of vital signs. My most significant "symptoms" which continue to today (4/16) were a fullness within my right ear, tinitius (ringing), and clicking inside the ear with each pulse. The clicking is sort of like a stapler with each pulse. Sort of makes it hard to sleep, but I've mostly gotten used to it. The doctors say that should pass in about 6 weeks.
Day 3 - Sat
More recovering all day with a lot of walking around and a bunch of laying in bed watching the Masters. Not that I'm that interested, but it's pretty to watch. The upside of the day was that Sara came in the afternoon and stayed all day. It was very so very peaceful with her there and the sunset over the Hudson was very nice. Starting to feel myself again. Getting ready to get out. More details about this day when I post again.
Day 4 Sunday
Sprung - checked out at 9:30 Easter Morning.
More later...
Day 1 - Thursday
With a sunny morning, the room seems bright and things are looking up. There is still dry throat and mouth, but I can take a few ice chips without immediately getting nauseous, so there's progress. The recovery nurse has passed on a breathing exercise device which I am told to use every hour to help loosen up and exercise my lungs - basically a plastic device you inhale and exhale in to a fixed level while keeping a activity floater between two bars. It's not too bad of an exercise, although I can tell I'm weak to start. Then within 30 minutes of getting there, a full breakfast is delivered. I still can't bear the thought of food, so it sits. Overall I was not feeling great, but it was as if the blur of the night had cleared. Then it really helped when Dr. Sisti stopped by.
He started off with the "is your brain functioning tests" which had become common from the night before. Just so as you know, you would get requests to: smile, stick out your tongue, follow a finger with your eyes, apply negative and positive pressure with extremities, answer questions as to the date and location, and now juggle these, do a tap dance and sing the Catalina Magdalina Luptenschteiner Volunbeiner song!. Well, not yet...
Anyhow, Sisti reviewed ( a second time since he had done it at my bed side in recovery) how the operation had went. That they had removed all of the tumor, and that I was till in the game on hearing in my right ear. He also described how since my tumor had not yet compromised the balance nerve before it was removed, my adjustment period would be more difficult than someone who had already had time to compensate - someone with a larger tumor. He was very upbeat, very confident, and very matter of fact. I could not have appreciated it more. At the tail end of his review my Mom and Sara arrived for a short visit, so they got the chance to speak to the doctor. He gave them a brief review of what he had just told me, and then commented on the changes since my Mother's surgery some 20 years ago for the same thing. I was very thankful she got to meet him. Their visit was for a large part of the morning, but it seemed short to me. I did a lot of fading in and out of naps. That was fine though it was nice for them to be there just reading and relaxing. I did try and sit up once with the help of the electric bed, and wow, what a spin. Actually, more of a shake from side to side and general feeling of unsteadiness. I laid back down and had another nap. Pain wise, I was not too bad off. My muscle pull in the neck was still very sore, but I did not have headaches and the 12 staples in my head did not hurt at all. I maintained tylenol - mostly for the neck. I would not say the day was easy though - sort of like a really bad hang over. I did have one last bought of nausea. Just as Sara and and my Mom were leaving I tried to sit up and say goodbye and had a an unexpected hurl which sprayed their visitor passes. I think they were let out OK without them...
A nice bonus of being in the regular room rather than recovery was the removal of all the other attachments - leg massagers, artery feed, and automated blood pressure.
An aside - Timing
Before surgery I provided you with an interesting story of Microsoft's timing and their legal issue management. You read it right?
Well, think about timing another way - changes in this surgery and how it was approached now and then. In the 1950s, 20% of those with an AN died during surgery. In subsequent decades, rates improved, but other issues lagged. See a little history. I was really lucky to have this identified now rather than earlier. Even as my brother relates the stories of his friend Trent who had AN surgery 10 years ago, I am so much better off. It took him a year to feel himself again. Here I am 9 days out and I can basically function. Oh, and while I'm bouncing around, there's another story about Microsoft to read . Fun stuff.
Another aside - Location location location
If you must recover from brain surgery, consider a decent locale for it. On the 8th floor Hudson North ward you overlook the Henry Hudson Parkway and the Hudson River. There is also a spectacular view of the George Washington Bridge with a stark table and two chairs as your only furniture. When you're shuffling around the hallway it's nice to look out and see. Also, if you stroll north through the epilepsy ward you have a nice view of Midtown.
At the end of the day, I was able to make it to the bathroom unaided. Wobbly, but OK, and no nausea. I needed the pee bottle late that night, but then it was done. The anesthesia is a significant poison to the system. Have I said that already? At this point though I feel very lucky that I do not have the headaches that were predicted or the nausea any more. I still do not have an appetite, but I fault the anesthesia for that. By the middle of the night I have been able to eat a couple of snack well cookies and a bit of muffin.
Day 2 - Friday
Other than gradual improvement on all fronts - more walking and a little more appetite, the highlight of the day was seeing my girls. They came in about 2:00 for about an hour. The brought hand made gifts and gave me big hugs. It was toughest on Claire who is our most sensitive. She was really upset by the sight of my staples (which are quite dramatic):
My ear seems swollen also - it's not THAT big. :)
Anyhow, Claire was doing her best to be very brave and happy to see me, but she was also upset at the sight of it. With a few extra hugs she made it through, but it was hard. My Mom and Barbara (Sara's Mom) took the kids downstairs to get a little ice cream, so that helped divert them a bit. I also felt bad that traffic really sucked that day. I can't believe Sara hung on for a trip to mid-town so the Grandmas could look visit a ribbon shop.
Let's see, what else? That day I also had a visit from the occupational therapist who (with two students) walked with me around the Hudson North race track checking out my progress. They were very impressed that I could turn my head to the right and back and maintain balance. Usually, a turn to the operated side results in uneasiness early on. This was my first sign I was doing better than I thought. I could also stop and start on demand with little problem. This was the only time I saw them. As far as doctor visits, of course they do continue throughout. On the first couple of days I would see neurosurgeon and ENT interns both in the morning and evening. Mostly, just the afore mentioned brain tests and questions of any issues. I did have a bit of clear drainage down my throat and nose (very little) which concerned me as it could have been a spinal fluid leak, but I reported exactly what I had and it was discounted as normal healing and drain. The other visits were the nurses. There was of course a normal schedule of medications - steroids, pain (tylenol only), and digestive medications, and checks of vital signs. My most significant "symptoms" which continue to today (4/16) were a fullness within my right ear, tinitius (ringing), and clicking inside the ear with each pulse. The clicking is sort of like a stapler with each pulse. Sort of makes it hard to sleep, but I've mostly gotten used to it. The doctors say that should pass in about 6 weeks.
Day 3 - Sat
More recovering all day with a lot of walking around and a bunch of laying in bed watching the Masters. Not that I'm that interested, but it's pretty to watch. The upside of the day was that Sara came in the afternoon and stayed all day. It was very so very peaceful with her there and the sunset over the Hudson was very nice. Starting to feel myself again. Getting ready to get out. More details about this day when I post again.
Day 4 Sunday
Sprung - checked out at 9:30 Easter Morning.
More later...
Posted at 05:02 PM
Sun - April 11, 2004
Well, I'm back (part 1)
Sunday the 11th and I'm
home.
I've been here since 10:30 or so, but it is still hard to type very much at one sitting, so this initial entry will take a while. Returning to my original goal of documenting this for myself I hope to reach back to the morning of surgery and follow the events as I recall them up to this point. I'll intersperse medical status and personal observations along the way. OK, back to this past Wednesday morning.
At 4:45 I was up for good after a fitful night of not much sleep. You know the sort. When you have an expectation of needing to be up and looking at the clock each hour or so. Well, that was me. I pulled on my sweats, brushed teeth, and gathered the bag I had packed. It was actually quite minimal and was to be left in the car. Sara had a larger bag, with things to do while I was in OR. I removed my wedding band and stashed it in the bed side table. No problems getting in. As you would expect, the roads were clear and we cruised across the GWB getting there a bit before 6:00. There were probably a dozen or so others in the same day check in room with us. You pick leave your name, the receptionist places it in the queue, and calls you when she's ready. Then it's a matter of signing a few forms and getting a wrist band. Then we were directed to the green doors for OR check in. After going through the second one, there is a semi-circle of stalls where you meet your first nurse. There they take your vitals for the first time, and have you strip down to nothing, and don a standard issue hospital gown. I have to admit my last emotional moment at that point - fear, trepidation, you name it. Thankfully it passed quickly and then the anesthesiologist arrived. He described what would be happening and introduced his partner. Then they left, the lead nurse stopped by to say hi, and that was about it. The next person we saw was the anesthesiologist again to tell me it was time. It seemed sudden that he would come without a surgeon to give us a briefing of sorts, but he said they were in doing the final prep to the room and I should go on in. I gave Sara a hug and off I went. Nothing too out of the ordinary in the OR - lots of activity, tools, and lights. As a nice touch the table was heated when I laid down on my back. Then, the anesthesiologist began placing a needle in my arm for the cocktail to get me started. Once he had that set, is partner came over and told me he was going to give me something to make me relax. Three seconds later I was OUT.
The next thing I remember (eight hours later) was waking up, seeing Sara standing above me, smiling (with full facial control), and then throwing up. The most pain I felt was in my neck which had been turned toward the side for 8 hours for access to the tumor. It's the muscle right at the top of the neck, and boy did it hurt. The biggest hit on my system was certainly the anesthesia. My mouth was so very dry and any introduction of water caused nausea. They did have swabs that they would rub in your mouth, but the help they provided was minimal. I would recommend asking the nurse to leave one of those on your chest so you an use one as possible/needed.
I was SO happy to see my wife, and to know that I could smile fully. It was an amazing feeling. Then Dr. Sisti stopped by to tell me how it went. They succeeded in removing all of the tumor. The first 6 hours were spent on the bulk of it. After that, they decided that the position and nerve impact was such that they could get the rest. Dr. Wazen performed the last "plucking". My hearing in the right ear is still somewhat dodgy, but I am told it will be 3-6 months before I know the final outcome. I'm fine with waiting for now given how well everything else went. I can hear very slightly in the right ear, but there are three issues I'm dealing with. 1 - Tinitius, the ear ringing is still there. No worse or better than before, so I think I can deal with it. 2- Clicking, with each pulse there is a click that is quite annoying. I am told this will subside in 6 weeks or so. 3 - Fullness in the ear, this is simply the healing process. There's a lot of drainage & mending to be done and it will take a while to settle down. Dr. Sisti indicated that they did not damage the auditory nerve any more than it had been, and he noted it had it's own artery running the length of it, so I am confident for some recovery. I also have a follow on appointment with Dr. Wazen to discuss possible implant options in a month. That said, there is a convenience factor to having a bad ear turned towards a wife. :)
Back to that recovery night.
Time is your enemy. It seems to go so slowly.
I had the distinction of being in the best shape of anyone in the recovery room, so I was destined to stay there. Neuro ICU was full when I entered recovery, so they just kept me there. As anyone will tell you, the pain and discomfort is quickly forgotten once you leave. Since it has been 6 days for me, it already does not seem so bad, but it was not fun. I keep returning to the neck pain. Also, due to the anesthesia they can not give you anything stronger than tylenol for the pain. It does OK, but still it can be tough to keep it down. And then there are the tubes and attachments - one in one arm and two in the other. Also, they had the anti-clot sock on my legs that inflated each 45 seconds. Fun fun. Oh, and of course there was the automated blood pressure device which seemed to be too tight and happened at the worse times.
But time proceeds and you get out of there. One final comment though.
Nursing staff should know that the "meat" laying around can hear all they say. I was very disappointed and honestly pissed off that when I asked for a throw up bowl a third time, the floor manager (Nancy) was 30 minutes into her dissertation on why all of those in her ward should not be there and why were they not in ICU when beds were now available. For her to be worrying about office politics so actively and in front of the patients I found very off-putting.
OK, Thursday Morning comes.
8:00 AM - they remove my catheter. Did I say I had one? My fear on that one was misplaced. It was a non-event. Typically male to think it would be.
They wheeled me up to the 8th floor of the Milstein Building (8th floor west) for my recovery. Once again, a political battle ensued - this time over the bed I was in. Recovery wanted to keep me in the one I was in and get rid of it. The 8 West staff preferred their own beds - they were better. I was moved to a new bed with no problem, and said goodbye to my recovery nurse - there was actually one nice one.
Well, I'm running out of gas here, as I expect you are. Stay tuned for part 2, the rest of my hospital time in the next entry.
I've been here since 10:30 or so, but it is still hard to type very much at one sitting, so this initial entry will take a while. Returning to my original goal of documenting this for myself I hope to reach back to the morning of surgery and follow the events as I recall them up to this point. I'll intersperse medical status and personal observations along the way. OK, back to this past Wednesday morning.
At 4:45 I was up for good after a fitful night of not much sleep. You know the sort. When you have an expectation of needing to be up and looking at the clock each hour or so. Well, that was me. I pulled on my sweats, brushed teeth, and gathered the bag I had packed. It was actually quite minimal and was to be left in the car. Sara had a larger bag, with things to do while I was in OR. I removed my wedding band and stashed it in the bed side table. No problems getting in. As you would expect, the roads were clear and we cruised across the GWB getting there a bit before 6:00. There were probably a dozen or so others in the same day check in room with us. You pick leave your name, the receptionist places it in the queue, and calls you when she's ready. Then it's a matter of signing a few forms and getting a wrist band. Then we were directed to the green doors for OR check in. After going through the second one, there is a semi-circle of stalls where you meet your first nurse. There they take your vitals for the first time, and have you strip down to nothing, and don a standard issue hospital gown. I have to admit my last emotional moment at that point - fear, trepidation, you name it. Thankfully it passed quickly and then the anesthesiologist arrived. He described what would be happening and introduced his partner. Then they left, the lead nurse stopped by to say hi, and that was about it. The next person we saw was the anesthesiologist again to tell me it was time. It seemed sudden that he would come without a surgeon to give us a briefing of sorts, but he said they were in doing the final prep to the room and I should go on in. I gave Sara a hug and off I went. Nothing too out of the ordinary in the OR - lots of activity, tools, and lights. As a nice touch the table was heated when I laid down on my back. Then, the anesthesiologist began placing a needle in my arm for the cocktail to get me started. Once he had that set, is partner came over and told me he was going to give me something to make me relax. Three seconds later I was OUT.
The next thing I remember (eight hours later) was waking up, seeing Sara standing above me, smiling (with full facial control), and then throwing up. The most pain I felt was in my neck which had been turned toward the side for 8 hours for access to the tumor. It's the muscle right at the top of the neck, and boy did it hurt. The biggest hit on my system was certainly the anesthesia. My mouth was so very dry and any introduction of water caused nausea. They did have swabs that they would rub in your mouth, but the help they provided was minimal. I would recommend asking the nurse to leave one of those on your chest so you an use one as possible/needed.
I was SO happy to see my wife, and to know that I could smile fully. It was an amazing feeling. Then Dr. Sisti stopped by to tell me how it went. They succeeded in removing all of the tumor. The first 6 hours were spent on the bulk of it. After that, they decided that the position and nerve impact was such that they could get the rest. Dr. Wazen performed the last "plucking". My hearing in the right ear is still somewhat dodgy, but I am told it will be 3-6 months before I know the final outcome. I'm fine with waiting for now given how well everything else went. I can hear very slightly in the right ear, but there are three issues I'm dealing with. 1 - Tinitius, the ear ringing is still there. No worse or better than before, so I think I can deal with it. 2- Clicking, with each pulse there is a click that is quite annoying. I am told this will subside in 6 weeks or so. 3 - Fullness in the ear, this is simply the healing process. There's a lot of drainage & mending to be done and it will take a while to settle down. Dr. Sisti indicated that they did not damage the auditory nerve any more than it had been, and he noted it had it's own artery running the length of it, so I am confident for some recovery. I also have a follow on appointment with Dr. Wazen to discuss possible implant options in a month. That said, there is a convenience factor to having a bad ear turned towards a wife. :)
Back to that recovery night.
Time is your enemy. It seems to go so slowly.
I had the distinction of being in the best shape of anyone in the recovery room, so I was destined to stay there. Neuro ICU was full when I entered recovery, so they just kept me there. As anyone will tell you, the pain and discomfort is quickly forgotten once you leave. Since it has been 6 days for me, it already does not seem so bad, but it was not fun. I keep returning to the neck pain. Also, due to the anesthesia they can not give you anything stronger than tylenol for the pain. It does OK, but still it can be tough to keep it down. And then there are the tubes and attachments - one in one arm and two in the other. Also, they had the anti-clot sock on my legs that inflated each 45 seconds. Fun fun. Oh, and of course there was the automated blood pressure device which seemed to be too tight and happened at the worse times.
But time proceeds and you get out of there. One final comment though.
Nursing staff should know that the "meat" laying around can hear all they say. I was very disappointed and honestly pissed off that when I asked for a throw up bowl a third time, the floor manager (Nancy) was 30 minutes into her dissertation on why all of those in her ward should not be there and why were they not in ICU when beds were now available. For her to be worrying about office politics so actively and in front of the patients I found very off-putting.
OK, Thursday Morning comes.
8:00 AM - they remove my catheter. Did I say I had one? My fear on that one was misplaced. It was a non-event. Typically male to think it would be.
They wheeled me up to the 8th floor of the Milstein Building (8th floor west) for my recovery. Once again, a political battle ensued - this time over the bed I was in. Recovery wanted to keep me in the one I was in and get rid of it. The 8 West staff preferred their own beds - they were better. I was moved to a new bed with no problem, and said goodbye to my recovery nurse - there was actually one nice one.
Well, I'm running out of gas here, as I expect you are. Stay tuned for part 2, the rest of my hospital time in the next entry.
Posted at 07:00 PM
Sun - April 4, 2004
Last Post - PreOp
Greetings
All,
The next couple of days will be quite busy here at Tumor Boy central. My mother gets in to town tomorrow in the afternoon, and Sara's mom gets here Tuesday morning. It's a good thing there's so much to do before they get here as it keeps my mind off of Wednesday morning. For example, I cut and rebuilt a queen sized headboard to be a twin size for the extra bed we needed for the visitors, installed some trim where I had painted the stairwell (with balance issues it may be a while before I'm back up on a ladder), and I finished up the taxes. As Sara correctly indicates, it would be a fate worse than death if something happened AND I had not completed the taxes. Kidding aside, the bottom line is I won't feel like messing with it until after the 15th, so best to finish it up now.
I had dinner with Paul Carr in the City this past Friday after work. It was great to catch up with him and a few of the stories about folks I had not seen in ages. If you're an old NC Beta SigEp and you get this passed to you, please drop me an email . Where are you Robert Diemel?
I cleaned up a few loose ends in Princeton Friday work wise. It's a great group of folks there, and I'd like to thank them all for their support and friendship. Also, if you need a really slick mobile gaming infrastructure, you should jump all over it.
I would also like to take a moment to thanks everyone for their kind thoughts and prayers before this event which will most certainly change me and my perspective. In fact, I believe it already has to a certain extent. I'm not one for public presentation of my faith. That said, it has helped me through this so far and I expect it will going forward. What ever your religion or even if you do not profess one I appreciate your kind thoughts. I certainly offer mine back to you.
Monday Morning now...
Since I may not be able to hear from my right ear after this (50-50 chance as I see it), I've been playing ALOT of music - An odd mix of mostly female singers. Here's my playlist:
Belly - "Star"
Nellie McKay - "Get Away From Me" (current fave, "Respectable" is a brilliant song)
Tracy Chapman (first one)
Dylan - "World Gone Wrong" (Thanks W)
and, sorry to admit - Rose Falco "Up, Up, Up" (silly pop tune, but positive vibes)
and of course Radio Paradise
Now if you need a little reading before you next hear from me, have a look at this:
Robert Cringley's Current Column on Microsoft and TiMing. It is ALL timing isn't it?
You should also check out his archive if you follow tech issues at all.
And how about how our president has quietly gutted Thirty Years of Work towards clean air for our children.
Did I say Thanks W?
Anyhow, off to prepare the house and meditate (if you must know).
and, you still have time for the Bonehead Challenge...
Wish me luck, and I'll see you on the other side.
Jon
The next couple of days will be quite busy here at Tumor Boy central. My mother gets in to town tomorrow in the afternoon, and Sara's mom gets here Tuesday morning. It's a good thing there's so much to do before they get here as it keeps my mind off of Wednesday morning. For example, I cut and rebuilt a queen sized headboard to be a twin size for the extra bed we needed for the visitors, installed some trim where I had painted the stairwell (with balance issues it may be a while before I'm back up on a ladder), and I finished up the taxes. As Sara correctly indicates, it would be a fate worse than death if something happened AND I had not completed the taxes. Kidding aside, the bottom line is I won't feel like messing with it until after the 15th, so best to finish it up now.
I had dinner with Paul Carr in the City this past Friday after work. It was great to catch up with him and a few of the stories about folks I had not seen in ages. If you're an old NC Beta SigEp and you get this passed to you, please drop me an email . Where are you Robert Diemel?
I cleaned up a few loose ends in Princeton Friday work wise. It's a great group of folks there, and I'd like to thank them all for their support and friendship. Also, if you need a really slick mobile gaming infrastructure, you should jump all over it.
I would also like to take a moment to thanks everyone for their kind thoughts and prayers before this event which will most certainly change me and my perspective. In fact, I believe it already has to a certain extent. I'm not one for public presentation of my faith. That said, it has helped me through this so far and I expect it will going forward. What ever your religion or even if you do not profess one I appreciate your kind thoughts. I certainly offer mine back to you.
Monday Morning now...
Since I may not be able to hear from my right ear after this (50-50 chance as I see it), I've been playing ALOT of music - An odd mix of mostly female singers. Here's my playlist:
Belly - "Star"
Nellie McKay - "Get Away From Me" (current fave, "Respectable" is a brilliant song)
Tracy Chapman (first one)
Dylan - "World Gone Wrong" (Thanks W)
and, sorry to admit - Rose Falco "Up, Up, Up" (silly pop tune, but positive vibes)
and of course Radio Paradise
Now if you need a little reading before you next hear from me, have a look at this:
Robert Cringley's Current Column on Microsoft and TiMing. It is ALL timing isn't it?
You should also check out his archive if you follow tech issues at all.
And how about how our president has quietly gutted Thirty Years of Work towards clean air for our children.
Did I say Thanks W?
Anyhow, off to prepare the house and meditate (if you must know).
and, you still have time for the Bonehead Challenge...
Wish me luck, and I'll see you on the other side.
Jon
Posted at 09:33 PM
Wed - March 31, 2004
Well, aren't you a lucky duck...
I heard a wonderful song by Josh Clayton entitled
"Building Atlantis" after I got out of the shower this morning (as an aside, you
should check out a story of his on his site, Go HERE , click on
"Words From Josh", and then select "The Boy Who Planted the
World").
And, why would that be appropriate for this page you may ask?
Besides the fact that it's a nice little tune, Mr. Clayton was diagnosed with cancer and died at age 32. Shortly after he wrote this.
Do YOU have something you have been putting off for another day? Well?
***
I'd like to thank publicly two other former AN Sisti patients for their time and insights last night. Christine Nikolis and Lisa Marie O'Connell - Hodder your help is much appreciated. I hope I can return the favor to someone else after my surgery is all said and done. Basically, I've confirmed from many folks that I'm in good hands and that all will be fine. For anyone else who cares, my opinion on web bulletin boards is that you should not look at them except to find other patients of the same doctor with the same issue, and then you should contact them directly for a discussion.
It's one week prior to surgery and I don't plan on talking to anyone else about it.
There will be a few more posts here though, so stand by.
One comment on the Bonehead Challenge . I'm not playing, but I will make a donation to Doctors Without Borders for $250.
And, why would that be appropriate for this page you may ask?
Besides the fact that it's a nice little tune, Mr. Clayton was diagnosed with cancer and died at age 32. Shortly after he wrote this.
Do YOU have something you have been putting off for another day? Well?
***
I'd like to thank publicly two other former AN Sisti patients for their time and insights last night. Christine Nikolis and Lisa Marie O'Connell - Hodder your help is much appreciated. I hope I can return the favor to someone else after my surgery is all said and done. Basically, I've confirmed from many folks that I'm in good hands and that all will be fine. For anyone else who cares, my opinion on web bulletin boards is that you should not look at them except to find other patients of the same doctor with the same issue, and then you should contact them directly for a discussion.
It's one week prior to surgery and I don't plan on talking to anyone else about it.
There will be a few more posts here though, so stand by.
One comment on the Bonehead Challenge . I'm not playing, but I will make a donation to Doctors Without Borders for $250.
Posted at 03:47 PM
Tue - March 30, 2004
Mon - March 29, 2004
Pre-Op in NY
Well things are gearing up. Today I had my
Pre-Operative appointment at Columbia Presbyterian Hospital in NY. Although it
was chilly out, it was a beautiful day, so bright in fact that it was nice when
a tractor trailer pulled up on the side of me as I waited to cross the GW bridge
(45 minutes).
The visit itself was pretty quick and efficient. I started out by filling out the admission forms and authorizations for the use of things extracted from my body for medical study. Then it was in to see the nurses and doctors. Here's what you get when you have pre-Op for an Acoustic Neuroma:
1) Give blood (4 vials filled for various tests)
2) EKG print out
3) A visit with an admitting doctor who asks a slew of questions, pokes around, checks reflexes, and advises you to stop taking aspirin or any alcohol (bummer, if I'd known I would have had an extra glass of wine with dinner last night). He then fills in some paperwork, and passes you off to the anesthesiologist who...
4) Asks more questions about any allergies, describes the process, and asks if you have any questions.
5) Have a chest X Ray - front and side.
In between #3 & #4, my favorite administrator, Mary, stopped by to collect my MRI and pass on contact information for my Nurse Practitioner and to tell me I had an appointment with her after I was done with pre-Op. Mary was no more pleasant in person than on the phone, but what can you do? All I can do is continue to be nice.
My NP is Maria Farrow. She seems very nice and was extremely helpful in regard to what to expect. We conferenced in Sara at work and had her join in for questions and the description. I then had a tour of both the Neuro ICU and the recovery area. Both are in the Milstein building. As you would expect. it's very busy and scary around the ICU - many more people in worse shape than I will probably be in. It made me feel pretty lucky, strange as that may sound.
I was done and out of there by 11:30. I got back to Montclair in time to have lunch and pick up Jane. Now it's back to the grind. Perhaps I'll post more later including a page with the "Bonehead Challenge", so stay tuned...
The visit itself was pretty quick and efficient. I started out by filling out the admission forms and authorizations for the use of things extracted from my body for medical study. Then it was in to see the nurses and doctors. Here's what you get when you have pre-Op for an Acoustic Neuroma:
1) Give blood (4 vials filled for various tests)
2) EKG print out
3) A visit with an admitting doctor who asks a slew of questions, pokes around, checks reflexes, and advises you to stop taking aspirin or any alcohol (bummer, if I'd known I would have had an extra glass of wine with dinner last night). He then fills in some paperwork, and passes you off to the anesthesiologist who...
4) Asks more questions about any allergies, describes the process, and asks if you have any questions.
5) Have a chest X Ray - front and side.
In between #3 & #4, my favorite administrator, Mary, stopped by to collect my MRI and pass on contact information for my Nurse Practitioner and to tell me I had an appointment with her after I was done with pre-Op. Mary was no more pleasant in person than on the phone, but what can you do? All I can do is continue to be nice.
My NP is Maria Farrow. She seems very nice and was extremely helpful in regard to what to expect. We conferenced in Sara at work and had her join in for questions and the description. I then had a tour of both the Neuro ICU and the recovery area. Both are in the Milstein building. As you would expect. it's very busy and scary around the ICU - many more people in worse shape than I will probably be in. It made me feel pretty lucky, strange as that may sound.
I was done and out of there by 11:30. I got back to Montclair in time to have lunch and pick up Jane. Now it's back to the grind. Perhaps I'll post more later including a page with the "Bonehead Challenge", so stay tuned...
Posted at 04:00 PM
Thu - March 25, 2004
Other experiences
It's funny how you mention an AN to someone and
they know of or are related to someone who has had one. I've had a few of these
experiences in the last week that I'd like to add to my diary
here.
When asked to help out recently on a weekly basis in Claire's class I had to decline given my expected "outage". I for some reason felt the need to tell her teacher Mrs. Dione Olsen why. I think mostly I tell people I see on an occasional basis so that they are not surprised when post-surgery my appearance is different or that they wonder where I am when I'm not around for a few weeks. Anyhow, Dione's Brother-In-Law, Buddy Rowe, had an Acoustic Neuroma a few years back, and his doctor was Dr. Sisti - my doctor. I spoke to Buddy for about a half hour last week, and he confirmed my positive opinion of Sisti. He said he was a straight shooter, very professional, and yes, he saved his life. He could not have been more positive. It sounded like Buddy's situation was more complex than mine, a tough position and larger tumor. His operation was about 12 hours.
Then, this Monday I hooked up with Greg Lewis who is the Son-In-Law of a friend of my Father. Greg had the Translab approach performed to remove a 1.5 cm tumor about 2 years ago. He detailed many issues with balance and nausea after the surgery that I have read about, but not heard about first hand. He also had some good insights on the loss of hearing in one ear.
And today I had a nice chat with the father of our friends in town the Levy's. Warren's dad is a retired neurosurgen from New Orleans. He supported my proposed approach given my current hearing level and the size of the tumor. It's always nice to have a supporting opinion. By the way, Warren and Sandra have graciously offered to have our kids over for a movie play date tomorrow night which gives Sara and me a chance to go out for dinner in town. It's greatly appreciated.
Let's see, what else -
We plan on telling our daughters about my situation tonight. It's been hard keeping it from them of late. I'm tired of the hushed conversations and the "cone of silence". Hopefully they won't be too upset.
Next up is my pre-op appointment on Monday the 29th. I'm hoping to finish the taxes this weekend and maybe do a bit of painting. The rear entry way will require me getting up on a ladder to get the high spots. Given the loss of balance I expect, I want to get this done before surgery, so I don't fall off. As Sara will attest, it's hard enough for me to stay up on ladders with my full balance nerve.
I bowled a 197 last night. Wish I could get a 200 before this surgery.
Also, a special thanks to the Bambrick-Santoyos for all they've done for us already. The prayers, the meals, the information, and the friendship have been spectacular. We are truly blessed to have such wonderful friends and family.
That's it for now.
When asked to help out recently on a weekly basis in Claire's class I had to decline given my expected "outage". I for some reason felt the need to tell her teacher Mrs. Dione Olsen why. I think mostly I tell people I see on an occasional basis so that they are not surprised when post-surgery my appearance is different or that they wonder where I am when I'm not around for a few weeks. Anyhow, Dione's Brother-In-Law, Buddy Rowe, had an Acoustic Neuroma a few years back, and his doctor was Dr. Sisti - my doctor. I spoke to Buddy for about a half hour last week, and he confirmed my positive opinion of Sisti. He said he was a straight shooter, very professional, and yes, he saved his life. He could not have been more positive. It sounded like Buddy's situation was more complex than mine, a tough position and larger tumor. His operation was about 12 hours.
Then, this Monday I hooked up with Greg Lewis who is the Son-In-Law of a friend of my Father. Greg had the Translab approach performed to remove a 1.5 cm tumor about 2 years ago. He detailed many issues with balance and nausea after the surgery that I have read about, but not heard about first hand. He also had some good insights on the loss of hearing in one ear.
And today I had a nice chat with the father of our friends in town the Levy's. Warren's dad is a retired neurosurgen from New Orleans. He supported my proposed approach given my current hearing level and the size of the tumor. It's always nice to have a supporting opinion. By the way, Warren and Sandra have graciously offered to have our kids over for a movie play date tomorrow night which gives Sara and me a chance to go out for dinner in town. It's greatly appreciated.
Let's see, what else -
We plan on telling our daughters about my situation tonight. It's been hard keeping it from them of late. I'm tired of the hushed conversations and the "cone of silence". Hopefully they won't be too upset.
Next up is my pre-op appointment on Monday the 29th. I'm hoping to finish the taxes this weekend and maybe do a bit of painting. The rear entry way will require me getting up on a ladder to get the high spots. Given the loss of balance I expect, I want to get this done before surgery, so I don't fall off. As Sara will attest, it's hard enough for me to stay up on ladders with my full balance nerve.
I bowled a 197 last night. Wish I could get a 200 before this surgery.
Also, a special thanks to the Bambrick-Santoyos for all they've done for us already. The prayers, the meals, the information, and the friendship have been spectacular. We are truly blessed to have such wonderful friends and family.
That's it for now.
Posted at 04:12 PM
Fri - March 19, 2004
More Snow
But the kids are in school. Speaking of snow,
some pictures are
here.
Not much new on the medical front - just waiting....
Look for more updates here after the 29th appointment. In the mean time if you need something more entertaining to read, go here .
Jon
Not much new on the medical front - just waiting....
Look for more updates here after the 29th appointment. In the mean time if you need something more entertaining to read, go here .
Jon
Posted at 09:48 AM
Wed - March 17, 2004
OK - Finally got to Sisti's Office Manager
I have no idea what I have done to piss her off,
but Mary @ Dr. Sisti's office finally returned our calls with the authorization
for out of network surgery from Cigna. Suffice it to say I will not be
delivering chocolates to her like Patty here in Montclair received for all of
her help. My pre-Op physical and review is the morning of the 29th at Columbia
Presbyterian at 9:00. X-rays, blood work, and a physical which should all take
about 3 hours. Then I'll be back in NJ to get Jane.
Posted at 04:07 PM